When You Still Don't Have Answers

 To recap, just in case I didn't actually write about or if I did to bring things into context.

Back in December 2021, I mentioned to one of my primary doctors that I've been have numbness and weakness in my arms and hands.  Sometimes it happens even when I'm laying in bed flat, or I can be laying on my left side and the right side goes tingly or vice versa. He said it was out of his wheelhouse and would refer me out.  I was perfectly okay with this.

A few months later I still hadn't heard anything so I called where I was referred to. They said it would be a 12 - 18 month wait, and that I should call in the summer to see where things stood. Fast forward to late autumn and still no appointment. And my referral is about to expire.  So I call the place I was referred to yet again only to be told there was a miscommunication and some faxes lost in limbo somewhere. 

I found out the wait was for a neurologist, but I was in fact referred to a neurosurgeon. That wait was only supposed to be 6 weeks.  They decided to gather information from my physical therapist and attempt to reach my primary again and review everything.  Neurosurgeon team decided I might benefit from a spine specialist first so that's where I ended up.  

She ordered an MRI of my lumbar region and nerve test on my arms.  Never having had a MRI done, I had no idea what to expect. Or if I would have a panic attack in the middle of it because I didn't know if I'd freak out in the tight space.  On top of that, I've been dealing with a cold for over two weeks and was sure I'd have a coughing fit in the middle of it.  In hopes of preventing that, I took a dose of Dayquil and a Benadryl for good measure. Also told the techs just in case. I made it through uneventfully, thank goodness.

At my follow up with the specialist we reviewed my results.  The good news is I don't need spinal surgery. The bad news is that we really don't have any answers to the cause of my pain. I don't have anything pinched which is good. But I do have early disc degeneration and a small tear in my disc at L5/S1. And arthritis in my lower spine. Despite all of this, she still can't tell me what is the cause of the pain. 

It could be all just the fibromyalgia. It could be that in addition to the arthritis, and bursitis which I have in my hip(s). It could be all of the above and/or soft tissue pain. It could be something they haven't diagnosed yet.

Next week I have my nerve test done. It is in part to determine if I have carpal tunnel or not, and if I do then to what degree. Depending on the out come I may or may not have an MRI of the neck and upper spine.  I'm also scheduled to see a chiropractor next month. And then back to the specialist in March.

I wish diagnosing me wasn't so complicated. So we're in a process of elimination pattern now. In the mean time, I am to continue with physical therapy even though sometimes I feel like I'm failing.

I need to come up with questions for my specialist, I just don't know what to ask. Mainly I want to know what can I do for the pain, especially on the really bad days. And what are some other possible causes, we started to touch on that but got sidetracked.

I think the worst part is the not knowing. Along with being unable to explain to others how I feel. When you have an invisible illness, it's hard for others to understand. It's equally hard for us to explain.  So many think oh if you just move more or do this exercise or lose X amount of weight or take this pill or that pill you are magically cured.

I have friends that going through similar things with chronic pain, arthritis, fibro, etc that are on medications and they've told me that none of it makes the pain go away. It's always there. On a good day, the meds just take the edge off.  I'm finding these days that over the counter stuff isn't really touching the pain. But I'm terrified to try anything else.  I've read about so many  horror stories that it makes me hesitant to ask for  or to try anything.  Still though, I think it is something I will have to talk to the specialist about.

So grateful for doctors that listen and not judge you.
In a recent visit with one of my primary doctors, he recognized that I was having an episode of PTSD during the exam and held my hand through it all while he using soothing words and assuring me that I was safe. I think it was the first time I full on had an episode in the midst of an exam.  So thankful he saw it and recognized for what it was, and helped me through it.

Until next time.... Bright Blessings